Vika had been a healthy child till she was six; she had never had any health problems. But then my daughter suddenly lost a lot of weight, her posture deteriorated. We decided to consult a doctor. At first the diagnosis was ‘scoliosis’; a course of massage was prescribed. Three days after the beginning of the course the state of health got worse: Vika couldn’t raise her hands; she couldn’t walk up the stairs. We were strongly advised to go to Moscow to find the reason.
‘Progressive muscular atrophy’, a terminal progressive illness — this diagnosis was given by the doctors in Moscow. Over the years Vika’s state of health will be irreversibly getting worse; her muscles will completely atrophied; she will no longer be able to hold her head and maintain her posture; her illness will render her completely immobile. Each month the illness is depriving the girl of health; time and again it becomes difficult for her to make more and more movements. With the help of the doctors we try to prevent the rapid progression of the illness. For that we do physical exercises, take medicine and courses of physiotherapy. We try to save as much time as possible, so that Vika has a chance to wait till a powerful drug is produced (and we do believe it will be produced).
Vika doesn’t have a strong immunity, so she often becomes ill. If she simply catches a cold, she might be transferred to an Intensive Care Unit: a great amount of phlegm accumulates in her lungs. Normally, the healthy people swallow phlegm; and if they have caught a cold, they hawk it and thus remove it out from the organism. But children with progressing muscular atrophy cannot remove phlegm out of the organism because their muscles are too weak. When Vika gets ill, she can’t cough out phlegm, so it stays in the lungs for too long and causes infections.
The doctors recommend that we should buy a percussion flow ventilation device (an apparatus to simulate coughing), because without it something awful might happen to our daughter. But the cost of the equipment is too high. Our family is a common one; we have two children; only my husband has a job. For how long will we be collecting the sum of RUB 299 000 to buy the device for Vika? Will she have enough strength not to get ill during the winter? I have decided to write you a letter: I do understand that nobody can cure my daughter as yet. But it will be possible to help her, to reduce her sufferings, if we are not abandoned, if we are not alone. So I beg you to help, as we will not be able to overcome the problem without your assistance.